Ample Ramblings: Making Room for Everyone

Check Us Out at User Friendly Vegas

noreply@blogger.com (Pattie) — Mon, 21 Jan 2013 00:40:00 +0000

We will be leaving this website up as a good reference and archive, but do not plan to write any other entries on this site.

Check out our writing about living with disabilities and chronic illness (including personal challenges and victories, along with macro-level social and cultural issues) in two places:

User Friendly Vegas: A project dedicated to promoting universal design through multi-media, including a docucomedy about living in Vegas with limited mobility.
CWD: Couples with Disabilities: An expert blog on Psychology Today addressing living life as a PWD and a caregiver.

Please note that some of the links on this website are broken. If you visit User Friendly Vegas, over time you will probably find more up-to-date links there.

As always, if you want to know all that we are up to, visit our company website: SINdustry CITY, where we try to keep all our projects updated.

Thanks for your support over the years! Looking forward to seeing you elsewhere on the web!

Cheers,
Pattie & Carl

GoFundMe Campaign

noreply@blogger.com (Pattie) — Sat, 07 Jul 2012 21:49:00 +0000

Help us with pre-production of our new documentary, User Friendly Vegas:

Fundraising Ideas

Who am I? Where do I belong?

noreply@blogger.com (Pattie) — Tue, 05 Jun 2012 23:10:00 +0000

I've been doing a lot of thinking this spring about my life, my career and my identity. It is probably because my 55th birthday looms large this summer, but it is also because I've been stuck in a rut for some time.

I am a vagabond at heart. I have lived in a lot of places and traveled to even more. If I were rich, I'd probably live in an RV or on a houseboat and move every two months or so, never going to the same place twice.

So when I realized in January that I had been living in the same apartment for 5 years, I also figured out that is the longest place I've stayed put in my adult life. My average in number of places per year is over 2. Yep, I've averaged 2 places a year for 38 years of adult living and that includes several places where I lived for more than 2 years. My record number of moves in one year was 6 times (not counting the year I live with hubby and brother in an RV).

We moved on May 1 to a much better place--mostly accessible place. It is more modern and healthier for us and only slightly more expensive. If I am stuck here for 5 years, I probably will not mind as much. The last place was, uh, let's just say substandard. I find myself these days feeling grateful for odd things like electricity, running water, garbage disposal, dishwasher, washer/dryer, air conditioning, closets, storage space and ventilation. We had a couple of those things at the old place but none in good working order.

It is funny how one can adapt to substandard conditions if one feels they must. I really didn't realize until after the move how much I was sacrificing. I guess the short of it is, the past 5 years have been rough. Moving has given me hope.

But I am still feeling a bit out of joint, and surprisingly, lonely, disconnected. I've always been somebody who can't have a party because none of my friends would get along with each other. I have always been an intersection rather than a team player, meaning that I know people from a number of cliques, but was never part of any particular clique.

I was too white-trash for the intellectuals and too smart for my neighborhood, too tom-boy for the geeks and too geeky for the athletes. I was too "free-spirited" for the religious and too "metaphysical" for the atheists. Too capitalist for the liberals and too anti-corporate for the conservatives. I'm not sure if this means I'm an individual or if my dad was right and I'm just "contrary."

Lately, I've been feeling this feeling again. I feel too disabled for fat folks and too fat for disabled groups. I have mobility issues, but I'm able to walk for a bit and most of my chronic disabilities are invisible. I am in pain almost all the time. But I don't show it often, except to my husband. I have become stoic in many ways when I'm out and about. If I can't achieve that stoicism, I stay home.

It doesn't help that I really haven't had a best friend for many years now, except, of course, my husband. But that is a lot to put on him. I used to have a small circle of girlfriends who I could turn to and who would turn to me. I don't know why this happened. One theory is age. Another is the Internet, which is really (sadly) my primary way of meeting people with any depth. Living with pain means withdrawing socially, so maybe it just that simple. In fact, I chose to write this on Ample Ramblings instead of Fattypatties because my pain is probably defining me more than anything else these days. Or, it may be that it is what constrains me most.

It would be nice, however, to connect. I have been reaching out to a few women for whom I have respect in an effort to move past the loneliness and find some friendship. It has helped.

As a sociologist, I study groups and group dynamics, but I also study identity and how groups shape our sense of ourselves. Not belonging any where specific has shaped who I am and how I think about myself. I know this, but it brings me little comfort to tell you the truth.

Here's what I know in this moment. I am (an interesting phrase when you think about it) many things that have social meanings: female, white, "late-boomer," fat, person with disability, chronically ill, teacher, writer, artist, working-class, intellectual, Ph.D. and so forth. But I am also what I enjoy, what I desire, what I envision, what I create.

So as I contemplate the remainder of my life during the next 7 weeks leading up to my 55th birthday, I hope to be making some changes, maybe even some you would call drastic.

I remember Patrick Swayze once said in an interview that the cure for burnout was "a calculated risk." I plan to risk being myself a little more often and let's see where that takes me. I really want to be more than my pain.

Stay tuned!

Adventures on the Road

noreply@blogger.com (Pattie) — Sat, 29 Oct 2011 22:09:00 +0000

I just spent the last 19.5 hours taking a bus to Phoenix and picking up a car from my brother. I wrote the following on my blackberry, while on the road and then emailed to the blog. The only editing I did was to add a video and a picture. Everything else was written pretty much real time. This is a slice of disabled traveling by a sociologist who loves to watch people.

Two weeks ago, after all the trials and tribulations of getting the van back up and running, the transmission broke. We found ourselves without a vehicle. When the weather is kind during the non-hell portion on the year, taking public transit in Vegas isn't that bad. Buses run often. RTC claims to have the most modern fleet in the country.
I've been a regular on public transit in New Orleans, Atlanta, Boston and Victoria BC. I've had various reasons for usage from no alternative to lack of parking to just enjoying the train. Las Vegas stacks up well. I was surprised because my experience as a tourist on the strip was not so pleasant.

Tonight I am on a Greyhound bus heading to Phoenix to pick up a car from my brother. The trip there will take 8.5 hrs. The trip back in the car might be 5 hrs. (I drive fast.)

It is an interesting contrast between RTC and Greyhound.
Public transit has a wide variety of commuters. Most have a purpose to their trek. Work and school top the bill.

The people are diverse. All ages, all ethnic groups, all classes except maybe the richest, all abilities.

Greyhound seems poorer. People look more worn. Greyhound is that form of transportation that people take as a last resort. Yeah, I know people sometimes take the bus for vacation. I've even done. Our first trip to Vegas was on this same route. We came away swearing never again. It seemed romantic until we landed at the bus station downtown. Between the fascist searches and the crazy people (including, we heard, a knifing nearby) the whole experience went from romantic dream to nightmare fairly quickly.

Now I know to catch the bus in Henderson. Way less trouble on every level.

The bus out of Vegas is probably filled with people who didn't make it here. Las Vegas can be a bad dream for a lot of people because it has often held more promise than it can deliver.

For me both experiences have an added layer. I need assistive devices to walk and I take up more space than the average adult.

7p. Rushing to catch the Henderson Express. I just barely make it to the stop to get on the bus. The HDX is one of the new "green" buses that run on hybrid fuel & electricity. This is the easiest ride for me. The bus is designed for easy use for scooters & chairs.

7:30p get off at the Lake Mead stop in Henderson. I have to back track Boulder Hwy to the convenience store where the bus comes. I end up on a walking/biking trail that parallels the hwy. Nice riding surface but it is dark. I'm thinking I really need to consider a headlight for my scooter. The trees and bushes that line the trail cast shadows that make the trip a little spooky.

7:40p. Will call ticket goes off without a hitch. Watched some teenage boys play hacky sack and discuss superpowers and science fiction and how cool it would be if science really worked that way. The convenience store is on a hill with a great view of the valley, including the strip and downtown. One of my favorite things about Vegas is the views. Day or night there is always something grand in sight.

8:20p northbound bus stops. Two of the teenagers get on board. The other 3 say good byes and then head down the trail. I can still hear them discussing Area 51 until their voices fade into the dark. Now it is just me and a grandmother heading back to Arkansas after a visit with the grandkids. She smokes a cigarette and talks about how worn her little ones made her. I think she's close to my age but most people would think we're from different cohorts. Smoking ages the face.

My mind wanders while she talks and coughs. The Latino couple who run the store have an Audi and a Mercedes parked in the lot. I know its theirs because they transferred stuff from store to cars earlier. I wonder about the store. Is it that lucrative? Do they own more? Henderson is filled with people living beyond their means. Status symbols.

8:40p. The bus is right on time. The driver was expecting a disabled passenger. I help him take the scooter apart & put in the compartment. Getting on bus is hard. He saved me a seat up front. No leg room but that's okay. I'm happy things go well without too much fuss.
10:10p. Laughlin & Arizona. Actually slept between Searchlight & Laughlin. Broke open trail mix. We stop in Bullhead AZ where bus drama ensues. Small towns often have no place to buy a ticket. Passenger has credit card and cash but not enough cash for ticket. After much ado the driver takes what he has & lets him ride. The smokers are happy. The argument gave them a chance for a second cig. I remember when buses were smoke filled. I usually smoked the entire trip. Today I'm grateful for the relatively clean air. The old man across from me took the opportunity to rub his feet with lotion. I try not to stare but I think he knows I noticed. Jonathan Richman's "You're Crazy for Taking the Bus" starts playing in my head. Would they kick me off if I played it?

I discover plugs on the walls. I feel smart that I brought my charger.
A young woman sits behind me. She tells the woman next to her about travels. She started in Florida. Went to Indiana then headed west. She joined a carnival in Utah & traveled with them all over the west. Then she found out she was pregnant. She's going back home to have the baby. That is a bus story. I love those travel tales.

11:14p Kingman Arizona. Route 66 fame. This is a long stop but I don't want to bother.

Definitely cooler here. Kingman is about 1500 feet higher than Vegas.
Accomplishment of the stop. I figure out how to make the seat upright.
I'm feeling the night. I'm ready to snooze.

Bus is filled with the smell of stale cigarette smoke, french fries and coffee. Kingman stop is next to McDonalds. These people are braver than me. It's 2.5 hrs to next stop. Am I the only one who has to pace intake for fear of output?

Two rows back a woman is telling a stranger that after 6 years she is running away from a man who beats her. Like I said earlier, the greyhound is the transport of last resorts, a place of transition. People are going somewhere physically and metaphorically. I guess that makes it a place of hope as well.

I make a note to myself that $3.33 is the best price for gas in Kingman. 20 cents cheaper than Vegas. I'm reminded of something Carl said earlier this evening, "Let's not complain about gas prices anymore." We are grateful to have a car. Tonight I'm grateful that the drama of late isn't like the drama I'm hearing on the bus. We are surviving and may even be on the verge of thriving.

I watch spy mysteries a lot. I know that Carl wonders, some times out loud, what I see in shows like MI5 and 24. I had an insight about this the other day. It is because that is how my life feels at times. Bombarded by one unexpected thing after another, Carl and I find our way around it, thru it. We survive. Sometimes it's exhausting and it takes its toll but we pull through. I remember one character on MI5 remarked after her husband was killed by bad guys trying to extract information from her that she knew she was going to be okay and that is what scared her. Survival can become a way of life. This is why I don't really panic often. Crisis is business as usual.

Oh yeah. Late night bus rides also inspire deep and heavy thoughts.

12:34a I fell asleep for about 45 mins. Woke up to a chorus of snoring. I was probably the alto. My mouth is dry. I pulled out trail mix. It helps.
Flagstaff is about 9000 ft high. Last time I was there they had snow drifts. My ears are popping as we climb I-40. More to say but can't keep eyes open.

2:05a Flagstaff
I switch seats now that the bus is thinning out. I woke up feeling like my legs were on fire but a little walking made it better.
That's the other problem for me with bus travel. Pain. But that is just something to work thru.

My brain is foggy. I hope I sleep the rest of the way.

5:00a. Phoenix.
I managed to dose most of the last leg of the trip. Going on I17 from Flagstaff to phoenix

6a had breakfast with Steve at Denny's. We shared bus stories. There are always stories. Even overheard our waitress telling another employee about her 30 hour trip.

7a. Ready to hit the road back to Vegas. Stopped at the QuikTrip for my Rooster Booster energy drink. I'm heading back.

9:45a
I'm in Wickenberg trying to get my legs to stop cramping so I can drive. I took a nap, ate a banana and drank some powerade. They still hurt. This is the longest I've had a day time spell. I'm afraid to go on but obviously staying here isn't really helping.

11:30 Wikieup
Sitting in the shade of a Joshua tree reflecting on what just happened in the ladies room of the Wikieup Trading Depot. My legs have been cramping bad. I stopped to give them rest. In washroom a woman asked me if I was having a good day I think because she sensed I was not. I told her about my pain & frustration. She asked if she could pray for me. I thought she meant privately. I said "I never say no when someone wants to send a prayer for me." At this point she lays hands on me & prays that my legs would be healed & that I have a safe journey. Another woman enters the room. A stranger to both me and my angel and she lays hands on me as well. There I am in the middle of the desert with two strangers (Carrie & Myrna) offering a prayer for little old Dharma bum me. I cried. This is one of my better road moments.

Oh and my legs do feel a little bit better. But my spirit was lifted no matter what the physical outcome.

12:34p noting the time because I'm back on I40 going full circle in almost exactly 12 hrs.

1:30p legs are doing much better. Didn't stop in Kingman. Stopped @ the last gas station in AZ before the dam. I'm about an hour from home. Still encountering nice people. Clerk in store was chatty & let me go to washroom without buying something first in spite of signs everywhere. Relieved. Homeward bound.

230p. Home.
Postscript: I thought about bringing my still camera on the trip and decided against. Of course this meant I missed some incredible pix including a herd of llamas in an urban neighborhood in Phoenix, about 25 hot air balloons on the eastern horizon at sunrise and about 15 people flying through the air on parachutes attached to something that looked like go carts.

Sent on the Sprint® Now Network from my BlackBerry®

noreply@blogger.com (Pattie) — Mon, 10 Oct 2011 19:22:00 +0000

We have a new joint blog on Psychology Today, examining coupling issues in the context of chronic illness. Today is our first entry. It is also our 19th wedding anniversary

Who Gets to Be Sick Today?

Birthday Wishes: Aging, Size Acceptance, Disabilities and Universal Design

noreply@blogger.com (Pattie) — Thu, 28 Jul 2011 17:06:00 +0000

Today I begin my 55th year on this planet. It will be a landmark year next birthday--that magical one where discounts and offers put me in a new marketing category. I have one more year of being middle-aged. Somehow, magically, one year from today, I will be transformed into an "early senior" as I've heard it described. Aging, as you can guess is on my mind today.

The last 4 years of my life have been transformative. I swear my biological clock said, you're 50 and now you break down. I take more medicines and supplements than I care to admit. I monitor my health in ways I never imagined. There are times when the hormones in my body render it alien to me. I keep thinking about how when you go through puberty the powers that be kindly offered classes and films to explain what to expect from a changing body. No such manuals and warnings have been easily available on the other end of the hormonal growth cycle. One of those "dropped threads" that it would be nice if it were more a part of our culture.

I've also been thinking a lot about size acceptance this week. Not that too many weeks go by that I don't think about that. After all, I live in a fat body and it is hard to escape that fact in day-to-day interactions. But this week I'm working on several projects that have brought ideas to the forefront. I've participated in some lively discussions. I've been editing a book that addresses some fundamental sociological questions on the topic. I've been planning a project for PDANation.

This week (July 26) marked the 21st anniversary of the Americans with Disabilities Act (ADA) and I've read several things online about questions of accessibility. I always think about such questions around this time because of the anniversary. Last summer I was working on an article about this time, so it was way more prominent in my mind than this year.

The thing is that aging, size acceptance and disabilities have a lot in common. These categories are not front and center in our culture. They often go against the grain of the young, thin and able-bodied goals presented to us for consumption through anti-aging, weight-loss and fitness advertising that fills our daily lives.

These categories have something else in common: in a world designed with a particular kind of human being in mind, just moving around in space becomes problematic. Social geographers have noted that space is designed from cultural contexts. Certain assumptions are made before the design is even thought about and when the design of something is commissioned, some of the parameters are already set by culture and may not even be marked specifically. Assumptions are just made. People just know.

This is why Universal Design is so important. It questions these assumptions and pushes for more inclusive design. It goes to the heart of the matter and does so without dividing people up into categories. It makes the world work for everyone.

So this is my birthday wish: It is my hope that as the designers, engineers and architects of the world seek to create new things, they will be inclusive. This means that they will talk to a wide variety of people about what they need to make their lives work. It means that a wide variety of people will have a chance to be designers, engineers and architects of our spaces. It also means that the principals of universal design will become commonplace in our thinking, our building codes and our lives. That is my hope.

AAPR takes on the size issue! Finally!

noreply@blogger.com (Pattie) — Thu, 09 Jun 2011 23:35:00 +0000

I really hope this is the start of something good. The airlines have been given too much power and have resisted the simplest ideas to make them comfortable for all people. I'm happy to see some understanding that the issue for people of size is part of the greater issue of people having rights when they fly.

I Take Up Space: New Blog on Psychology Today

noreply@blogger.com (Pattie) — Thu, 20 Jan 2011 04:19:00 +0000

I'm excited about kicking off a new blog at the Psychology Today website. The blog is called "I Take Up Space" and is about the consequences of fatism. The site has millions of visitors each month, so I'm hopeful that it will become an outlet for discussing Fat Studies as an emerging field and promoting sociological perspectives on these issues as well.

I write about the failure of New Year's Resolutions and the Moral Panic of the War on Obesity in my first effort.

(Please forgive my cross-posting if you read me in more than one place.)

Congratulations Concrete Change

noreply@blogger.com (Pattie) — Mon, 10 Jan 2011 21:48:00 +0000

With appreciation to Emory University, the Rollins School of Public Health and the Goizueta Business School...
Concrete Change is pleased to announce to you, our friends
and
supporters of housing justice
the selection of
Concrete Change
as one of the recipients of

The 2011 Annual Martin Luther King Jr.

Community Service Award
For our work to promote affordable, accessible integrated housing.

"Basic access in every new home."

www.concretechange.org 404-378-7455

Program and Award Ceremony:

Thursday, January 20, 2011 at 4:00 p.m.

Rollins School of Public Health

via Rolling Rains Report

Desert Companion Article: Let Us In!

noreply@blogger.com (Pattie) — Fri, 07 Jan 2011 22:01:00 +0000

I have published an article in Desert Companion, a local magazine, on Inclusive Housing in Southern Nevada.

Let Us In: Think accessible housing is
just an issue for the “disabled”? Think again. Making Las Vegas livable in the future means making homes more visitable — today

Please read and pass along to others.

If you are local, you can get issue in Coffee Bean & Tea Leafs in the Metro Las Vegas area.

And thanks to all who helped me research and write this article! Especially Marteen Moore, who generously let me come into her home.

This is Why Inclusive Housing is Important to EVERYONE

noreply@blogger.com (Pattie) — Fri, 07 Jan 2011 21:46:00 +0000

>

There are a slew of people nationwide who end up on nursing homes simply because housing isn't accessible. They do not need 24 hour nursing care, they just need shelter they can get into and move around in.

More young people are winding up in nursing homes

It's no longer unusual to find a nursing home resident who is decades younger than his neighbor: About one in seven people now living in such facilities in the U.S. is under 65. But the growing phenomenon presents a host of challenges for nursing homes, while patients like Martin face staggering isolation.

"Modest Needs" Needs Your Help -- Time, Not Money

noreply@blogger.com (Pattie) — Fri, 13 Aug 2010 20:40:00 +0000

How can you help?

1. Vote

Go to the Pepsi Grant Website and click on "VOTE FOR THIS IDEA"

It will prompt you for email and password or for registering. All they want is verification that you are of age and to identify you so that you can only vote once a day. I have not received one iota of SPAM from them.

Once you sign in and/or register, you have to hit "VOTE FOR THIS IDEA" again.

You know you will have voted when the button turns into a catchy response (they vary but they are obvious).

2. Comment

It looks like Pepsi is also considering the comments, so leave a short comment as well. It can be like 3 words: "Modest Needs Rocks!" or whatever you feel like saying.

If you read this blog, you know that modest needs has been instrumental for me being more mobile and healthier this year. This grant will not only make it possible for them to help hundreds of people from the oil spill region but it will also get them specific promotional support that will spread the word about this worthy effort.

This is about people helping people the way neighbors used to help each other. This is about people who fall through the cracks because their problems aren't popular or big enough to gather attention.

Please vote daily. They need to move from #4 to #2 in order to get the grant.

Thanks for your consideration.

Some Thoughts about Wilderness Access

noreply@blogger.com (Pattie) — Thu, 12 Aug 2010 20:57:00 +0000

I went up to Spring Mountain National Recreational Area yesterday for several reasons. Among them was to just get away from the Vegas heat. Traveling up about 7,000 feet cools things off.

But there wasn't much to do because only one very short accessible trail was available. It was a beautiful overlook in which you could see the desert below and really understand the extent to which the Mojave desert was really an ocean bottom at one point in its history. I enjoyed the overlook and was appreciative of its accessibility.

But the experience got me to thinking about a topic that has come up before. How do we balance accessibility with topography and a desire to leave as little human footprint as possible on natural environments we are seeking to preserve.

It is a tough nut. I've enjoyed several National Parks, Forests and Recreational Areas. That enjoyment has been enhanced because of efforts from groups like the Telecom Pioneers, who have worked with the parks to create accessible facilities and trails in our national park system.

But also I know that the topography limits these efforts. Near Roosevelt Lake in Arizona, the climb up to cliff caves were impossible for me. Anything that would make it accessible would destroy it. They came up with a creative idea however. I was directed to a hill nearby where I could look through a telescopic lens that was trained on petroglyphs. It was not like being there, but it was definitely the next best thing and, well, I really appreciated the creativity and thoughtfulness to have something.

Could Spring Mountains have something more? My first impression was probably. There were some areas where it looked like it might be possible.

Of course, the thought also occurred to me that maybe working it from the other end would be nice. Maybe instead of changing the trails, we should be thinking about some innovative ways to have the wheels to go through some of the trails. They already have motorized visitors. Certainly renting some of these kinds of vehicles would be a lot more feasible than the cost of making accessible trails.

And finally an old solution: Horseback Riding. I'm not sure what's available locally. I did a story about a program in Florida a few years back.

Happy Anniversary ADA! -- My Thoughts on ADA and Visitability

noreply@blogger.com (Pattie) — Mon, 26 Jul 2010 17:55:00 +0000

First things first. July 26, 2010 was the 20th Anniversary of the signing of the Americans with Disabilities Act, known as the ADA. I was just about to turn 33 years old when this was signed into office and I had no clue what it come to mean for me personally.

I was acutely aware of it. At the time I was working as a reporter and covering small towns across the Florida West Coast. Discussion of the implications of the act for local governments was a major topic and I sat in on many discussions and planning boards both before and after the passage of the act listening to multiple fears and advocacies about how much this would change the world. But West Florida is home to a great deal of Veterans and Veteran support was important so there were many in favor of the changes.

The more I've learned about the Act over the years, the more I've come to admire it.

But as radical as the ADA was/is, two things mitigate my celebration. First, enforcement on many levels is still lacking. The amendment passed in 2008 will probably help considerably, but the court system is only part of the problem. Local officials are often either ignorant of requirements of do a poor job of holding builders to a high quality of accommodations. I cannot tell you the number of times I've used supposedly accessible public places only to find a door that can't be opened, a 2 inch lip on a doorway after coming up a ramp or a ramp that leads to nothing but stairs. For me, these barriers can be frustrating but not necessarily harmful. Paraplegic friends can break bones going over lips, bumpy sidewalks, bad curb cuts and other seemingly small details. In other words, this kinds of details are dangerous. They are dangerous for older adults using canes or walkers as well.

The other mitigating factor is the question of private spaces which were not addressed by the ADA. I've written before about the need for more accessible housing and visitability. I think this is the next frontier in inclusiveness and as baby boomers go into retirement in the next 20 years, these kinds of homes are going to be more important.

But I want to talk more personally about my own recent experience in visitability. I was researching an article for a local magazine (more on that as things develop) and part of my research led me to Marteen Moore, a resident of Summerlin, who generously invited me into her home to show me the modifications that had been made to accommodate her. This was the first time I used my scooter in a private home. I have not even used it in my own home and would have to put my own portable ramp up to do so if I wanted to.

I was amazed at how it felt. I'm one of those speedsters on my scooter. I am totally confident wherever I go, but in someone's home I felt extremely cautious. I tapped a wall once and had a great fear go through me. Marteen was very sweet about it but I still felt nervous.

On the other hand, I was also amazed how comfortable it was to be able to sit and talk and not worry about pain in my legs or feet and not get worn out or feel uncomfortable in a chair that doesn't quite work for me. I felt welcomed and once I got past the nervousness, it felt very natural to be visiting in my scooter.

In short, it was a feeling I could get used to.

I was also pleased to talk about Marteen about how she deals with clients. I'm on the verge of a new business venture that may involve visits to client's homes. I've been debating about whether to pull out the portable ramp and using the scooter to enter client's homes. I'm still not sure about doing it and I know it is a privilege to even have a choice, but I was comforted by the independence such arrangements gave Marteen in her design business.

The bottom line is that the whole concept of visitability ceased being theoretical for me. My hope is that 20 years from now, we will be looking at an inclusive world where such stories as my visit are the norm, not the exception.

Thoughts on Accessibility and Remembering

noreply@blogger.com (Pattie) — Mon, 31 May 2010 16:09:00 +0000

This past week I've heard more stories of problems with accessibility that I have in a while and it got me thinking how sad it is that after 20 years, most Americans still do not understand what it means to be accessible or how the concept of reasonable accommodations in the ADA works.

My own experience in Vegas now that my scooter is working well has been mixed. I've run into dead ends and been jolted around more than a lot as I've navigated sidewalks and entrances into stores and public washrooms. Heavy doors are the worst. I can often get into a building but not into any room in a building without help. I still have pretty good upper body strength and ultimately can stand up and open a door if I need to do so. Not all people are able to do that.

I've heard stories about stores that have ramps they throw out when they know someone is coming. So basically if you are disabled and want to visit their store you have to call ahead of time so they can meet you and put out the special ramp. This is NOT accessibility. It is an attempt at accommodation, but it requires so much more of the person with a disability to make it happen that it really is a barrier. The fact that it is NOT accessible in the truest meaning of that word was underlined by a story I heard last week where a new employee that didn't know about the portable ramp at their store turned away a customer who called by announcing it was not accessible.

Accessibility means barrier free. It means that someone with a disability can enter just like someone without a disability. Back-doors, temporary ramps, being carried over a curb, being jolted by the two-inch lip in the doorway or having to make special arrangements to enter is NOT ACCESSIBLE.

Encountering such barriers are time-consuming and stressful. It is why many people with mobility disabilities are staying at home and hiding, even when they have assistive devices that could make them mobile and able to travel freely.

Another barrier that is becoming more common is the use of handicapped parking by people who "just will be a minute." I cannot tell you how many times I've parked in a handicapped space and returned to have someone slip into the little zone between cars as if that were temporary parking. At the moment, I don't require that zone as much as others do -- my scooter is hauled in the trunk. But when I was carrying the scooter in my van, it was through the side door and someone parked in that zone made it impossible for me to get back into my vehicle. People parking in spaces and in the zones around spaces are becoming more frequent and it doesn't help that law enforcement officers and government officials are starting to get caught breaking the laws by parking in those places, instead of enforcing the laws. (I've seen several media reports and online photos of this thing happening and I've seen it myself in and around Vegas.)

The flip side of the accessibility problem, however, is the overkill. I've heard about a casino restaurant here in Vegas that is going through this huge project that most likely was inspired by a lawsuit or settlement thereof. Instead of providing reasonable accommodations, which would be barrier free access, the management has decided that every person who identifies as disabled will have to be given exactly the same accommodations as able-bodied persons. This sounds like it is helping but it is not. The goal isn't sameness, it is equal access. So, for example, even though there are plenty of low-top, accessible tables in the bar, the company is spending money lowering a significant portion of the bar. This is not necessarily reasonable accommodations. Access to the restaurant and all its services is sufficient and, in fact, preferable to what becomes "special treatment." Pushing the limits to the extreme does not help persons with disabilities in the end because it looks like what they are after is something special and costly. The education that the company is giving to the employees is not creating sensitivity, but resentment. It would be different if the company were employing universal design, but they are not. They are going overboard to provide special accommodations that in the end reinforce the stigma.

I've written elsewhere that reasonable accommodations would not be that difficult if people understood it in the context of marketing and customer service. Of course, customer service is harder to find for anyone these days. Reasonable accommodations, like all accommodations, is a process and it requires sensitivity and cooperation. It is not something that one party does for another party. It is negotiated and that means something that I think is left out of almost every business and personal attempts to make accommodations for persons with disabilities -- it means if you want to know how to design a space that works for PWDs, ASK PWDs! If PWDs were more involved in the process, the process would work a lot better.

Vine Deloria wrote in Custer Died for Your Sins, regarding all the white people who have ever tried to "help" Native Americans: "We need fewer and fewer experts on Indians." I think this is true of most stigmatized groups. There is a built-in paternalism in reasonable accommodations right now that needs to go. Persons with Disabilities are people. They are not asking for anything other than to be treated like people and that means they should have a say over issues that affect their lives. It's not a difficult or unusual concept. But the way to do it is to INCLUDE PWDs, not try to think of how to help them.

Today is Memorial Day, a day set aside to remember people who have died in wars. I'm not a big fan of war, killing or nationalism, but I do know that one of the stated reasons that people in the United States go to war (both as a country and on a personal level) is to protect freedom. How sad it is that a substantial number of Persons with Disabilities are Disabled Veterans and the freedom they have fought for and given a part of their bodies for is systematically limited by the barriers that exist to their mobility in our society.

On this Memorial Day, remember that all reasonable accommodations are about is the freedom to be human. This should not be special. In a society that says it honors the freedom of individuals, it should be mundane.

Suncadia Universal Design Built Green Home in the Pines

noreply@blogger.com (Pattie) — Fri, 30 Apr 2010 00:09:00 +0000

This is very, very kewl!!! I want one.

Suncadia Universal Design Built Green Home in the Pines

This is a must listen!

noreply@blogger.com (Pattie) — Fri, 16 Apr 2010 04:07:00 +0000

I cannot really add to this. It is so what we hope to do here in Vegas.

Advopreneurship (tm)

noreply@blogger.com (Pattie) — Thu, 08 Apr 2010 22:51:00 +0000

Carl and I have been trying to put a handle on what we want to do, especially with promoting visitable and accessible housing. After kicking around the concept, we have settled on a simple and elegant summary:

ADVOPRENEURSHIP (tm)

The concept combines the free spirited inventiveness of entrepreneurship with the agenda of an advocate. Put simply, changing the world is part of the business plan.

We believe that working within a system of free enterprise can be innovative, creative and provide solutions not only to personal purchasing decisions but also to public issues.

What do we advocate?

We advocate visitability. The time has come for homes to be welcoming to more people.
We advocate a larger stock of affordable and accessible housing in local markets. Accessibility is trickier than visitability because persons living with disabilities are differently abled and as such need a wide variety of accommodations. But a home should be a place where we are most comfortable and it is possible to change the rules so that it is easier for accessibility needs to be met.
We advocate inclusion. At the moment, it is easy to find out a lot of information regarding properties that are for sale or lease. Want a certain kind of kitchen counter? You can probably search on that keyword and find a variety of homes that have that kitchen counter. But if you want to know if a bathroom has grab bars, you have to call each and every property agent and ask and hope they have been in there recently and remember. In other words, searching for accessible features is usually extremely time-consuming for the population that can afford the time and effort the least. This is a matter of choice, not a matter of technical know-how.

Stay posted in the weeks to come to see how advocating for these things can be part of a proactive, creative business plan and doesn't have to be left solely to non-profits to promote.

What's at Stake

noreply@blogger.com (Pattie) — Mon, 15 Mar 2010 07:18:00 +0000

An excellent description of the "costs" of ignoring visitability. It's so simple. Either we care or we don't.

What’s At Stake

These are serious matters. And yet . . .

* Most builders have not yet begun to construct routine access in new houses.
* Most buyers have not yet begun to demand it.
* Most policy makers have not yet made it a priority

Change Your Role, Change Your Health

noreply@blogger.com (Pattie) — Wed, 03 Mar 2010 18:03:00 +0000

I was a guest on Good Health Matters this morning discussing how social roles make living with chronic illness difficult. You can still listen to the show:

I had a great time talking about sociology's contribution to improving health and well-being.

I really love Verria's approach to chronic illness. She has a "Health Detective Starter Kit" for free on her website, The Good Health Coach. Living with chronic illness or disabilities can be difficult at first because the expectations you've depended upon no longer work. Figuring out what's wrong and what needs to be done is often a matter of sorting out the clues, just like a detective and then managing your life according to a new set of expectations.

While this seems overwhelming at first, the good news is that once the hard work is done, many of us feel empowered, not just in the sense of being well, but in the sense of really understanding our bodies and our selves. My personal experience with chronic illness and disability has been one of discovery and growth as well as struggle and challenges. I would have loved to learn the same lessons without all the pain and limitations, but I am grateful for the gifts of these discoveries nonetheless.

Homebuying Credits! Now is the time!

noreply@blogger.com (Pattie) — Tue, 02 Feb 2010 20:12:00 +0000

There are two reasons you might want to buy a home NOW:

You have not owned a home in the last three years.

You've owned the same home and lived in it consecutively for 5 out of the last 8 years.

If this is your circumstance, now is the time to shop for a new home. If you put in an offer to buy before May 1 and then close before July 1 of this year, you can file and receive a tax credit this year on your 2009 tax return.

You may be thinking that the best deal to close would be a foreclosure or short sale, but the time it takes to shop and gain bank approval and close may take 3 to 4 months. You don't have that time.

Here's the good news! Buying a newly constructed home closes much faster.

Give me a call to discuss new homes in the area and consider the tax benefits of acting now. Prices for new homes are bottoming out and they may be better than you think.

Call me or email me for more details!

Camera Working -- Here's Pix from Day I got my Scooter

noreply@blogger.com (Pattie) — Tue, 05 Jan 2010 23:21:00 +0000

Good news is that our camera is working again (turned out to be bad batteries). So here's some pix from when we pick up the scooter I got from Scooterville through the generosity of donors on Modest Needs.

We bought the scooter from Brad at Scooterville and picked it up at the Broadacres Swap Meet on Saturday, December 5. He's out there every weekend in Space 1304. Since then he's been totally supportive and we highly recommend him, his scooter team and his scooters to anyone who is looking for a great deal with wonderful service.

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I had to learn how to assemble and disassemble the scooter to get it in and out of the van.

Good news is that once I'm done, I got some place to sit and rest.

Social Stigma by Design

noreply@blogger.com (Pattie) — Mon, 04 Jan 2010 20:36:00 +0000

One of the things that holds back accommodations for differences in abilities is the paradigms through which we see things. There are many ways we are constrained by past thinking, but perhaps none are more constraining than the thinking that goes into design of the material world. Where we live, tools we use, equipment we need, roads we drive and so forth began as an idea in the minds of designers. Those minds were shaped by the culture in which they developed.

Cultural values and cultural mores are embodied in designs. This accounts for the wide varieties of approaches to the same functional problems, which makes specific places seem to be living reflections of the people who have lived there. Many believe that variety is what makes the world a beautiful and interesting place to live and visit. As an avid traveler who enjoys new places, I count myself among those who appreciate that diversity.

But people being who they are, stereotypical, prejudicial and xenophobic tendencies can also become embodied in designs, and once there, they continue to limit the lives and movements of people long after the minds of their designers have died out.

Paradigms limit the thinking of new designs as well. Once embodied, designs become the way its always been, the box that needs to be out-thought. So without someone standing up and saying "That does not work!" these patterns are often repeated even in the absence of intent.

Building homes that are not visitable by almost everyone is a good example of a paradigm that should be shifted. We live longer as a population. With long life comes limitations on mobility and ability. The old paradigm of a home is not a norm written in stone. It is an idea based upon a level of knowledge and born in a particular culture that was ignorant of diversity. In the same way that side and back doors in southern downtown stores are throwbacks to the days when darker people were expected to use the other "entrance" and whites only were allowed to walk through the front door, homes that are not accessible to wheelchairs and other mobility equipment are throwbacks to a world that pretended that we are all similarly-abled. We now better about the color of people's skin and we should know better about the status of those who require technologies to assist them in life.

All people should be welcomed.

The passage of the ADA allowed the world (and those with limitations as well) to see that we have a vast diversity of abilities. There are some that even assert that the persons living with disabilities constitute the largest minority group. We are visible now in a way that the physical barriers would not let us be before.

The appropriate response to this visibility is visitability. Homes carry with them a stigmatization of those who are differently abled. The social stigma of difference is built right into the narrow hallways, the steps to the front door, the second floor bathrooms. A house becomes a home for many reasons. Among them is who is welcomed. Extended family members with disabilities, friends and co-workers with disabilities and someday, maybe even you may need that little extra shift to know you are welcomed.

As new homes are being built, it doesn't cost that much to shift the paradigm to make a home visitable. All we need is the will to do it.

I-Team: The Power of One - Las Vegas Now

noreply@blogger.com (Pattie) — Sat, 02 Jan 2010 04:42:00 +0000

Here's the story plus video.

I-Team: The Power of One - Las Vegas Now

Story about Modest Needs--Airs 4p PST KLAS-TV today!

noreply@blogger.com (Pattie) — Fri, 01 Jan 2010 19:10:00 +0000

I was extremely excited to receive help from Modest Needs to become more mobile.

Now I'm happy to be part of letting Las Vegans and Nevadans know about this wonderful micro-charity!

If you are local, watch today (January 1st) at 4p on Channel 8, KLAS-TV. They are doing a story about Modest Needs, featuring me and my new scooter.

I highly encourage you to become a donor at Modest Needs if you can. And if you need a little bit of help to make this a great year, don't be afraid to ask.

Neighbors helping neighbors is a great way to make this a better world for us all.